This blog is dedicated to my daughter Kayla, who was diagnosed at birth with congenital myotonic dystrophy. She spent 105 days from birth in the ICU, her first 9 months on a ventilator and using a feeding tube. The doctors did not expect her to live to see her first birthday but she is still here and keeps defying the odds, thanks to lots of love and care from her family, friends, and amazing therapists, teachers, nurses and doctors. This is her story...

Wednesday, September 13, 2006

On Monday, September 4th, Kayla was highlighted on the 2006 Jerry Lewis Labor Day Telethon in the Sacramento region. They aired her story at 8:00 am and 11:15 a.m. and then interviewed us right after the 11:15 am showing. Kayla's nurse David, Kayla and I were interviewed by Channel 3/58's Adrienne Bankert and Kayla started the interview off right by giving the reporter a high five on cue. Just like any typical 1 year old, Kayla spent most of the interview trying to get her shoes into her mouth. She enjoyed all of the attention and seemed amused when the crowd in the studio started clapping for her. After the interview, I got on the phones and took pledges for most of the afternoon with both my mom and David. The news reporter that took over for Adrienne that afternoon, Edie Lambert, kept telling viewers to make pledges for Kayla. We brought a recent photo of our family taken by a local photographer, David McKay, with us and had it at the desk with us while we were taking pledges. The reporter kept showing the picture of our family and kept saying "Do It for Kayla!” At the end of the day, we brought Kayla up to answer phones with us and then they did a final interview of us again to end the show. Kayla had her five minutes of fame that day.

We had a good day but were sad because Jeff had to fly back East to be with his dad for surgery to put a shunt in his brain so he wasn't able to be there with us at the studio. Jeff's dad was diagnosed with hydrocephalus and is still in the hospital recovering but he seems to be doing a little better every day.Please keep him in your thoughts and prayers.

Unfortunately, 3 days after the telethon, Kayla started showing signs of getting a cold again. We had been in the television station for over 8 hours that day so likely she got a bug while she was there exposed to so many people. On Thursday night, I stayed up with her all night and suctioned her every few minutes. Kayla wasn't able to hold her oxygen saturation for the first time since she was released from the hospital last November and we ended up having to give her extra oxygen through her trach. By the morning, I called the nursing agency and begged for some relief and David came by for a few hours to let me get some sleep. By the afternoon, we took Kayla in to see her pulmonologist and within a few hours, Kayla was admitted to SutterMemorialHospital again. Unfortunately, it was Jeff’s birthday on Friday so we were both having flashbacks to last year on Jeff’s birthday when we celebrated it in the NICU. Of all days to land back in the hospital! It seemed very surreal to be back and we were even in the same room in the Pediatric ICU as we were last year. The only nice thing about the experience was to see Kayla’s former nurses and doctors. They were amazed at the progress Kayla has made in the last year and they told us how impressed they were that we were able to keep her out of the hospital for 10 months. According to the nurses, most kids with respiratory issues end up visiting the ICU every couple of months after they are released. I'm sure that Kayla's improvements over the last year wouldn't have been possible if she had gotten a cold so we were really grateful that she has made it for so long without getting sick. Although isolating Kayla all winter last year was incredibly difficult, it really paid off.

I was hoping to get some sleep while Kayla was in the hospital but unfortunately, I spent most of my days, suctioning her and trying to untangle her from all of the tubes and wires that she was connected to. She seemed amused at taking her oxygen off of her trach and removing her EKG leads on her chest. Kayla had an IV put in her arm which made it very difficult to nurse her but with a little positioning; I was able to finally feed her. Kayla also had a roommate in the hospital that was waiting to have trach surgery and the poor little boy sounded like he was drowning in his own saliva most of the time. Every time his mother would leave the room, sometimes for up to 10 hours at a time, he would panic and cry until she returned. When he cried, then he would start choking on his saliva. It was the most horrible experience I have ever been through. There were so many moments that I was tempted to go over there and suction him myself but that obviously wouldn't have gone over well with the nurses. After one 7 hour session of his crying on Saturday afternoon, I thought I was going to lose my mind and I begged the nursing staff to move us to a different room. I felt like I was being tortured because I couldn’t do anything to help him besides push the nurse call light for him every once in a while. Unfortunately, the ICU was full and there was nowhere for us to go. That experience was one of the most trying experiences ever and I have never felt more helpless in my life. What a nightmare for that poor sweet little boy.

Kayla stayed in the ICU from Friday evening until Monday afternoon and she was finally released after getting some heavy antibiotics and lots of breathing treatments. Luckily, Kayla's lung x-rays didn't show any signs of pneumonia. Kayla finally started showing signs of improvements on Sunday night and by Monday she was released to go home with an order to follow up with her pulmonologist within a day or two. After getting Kayla home, on Monday her breathing became labored again and by Tuesday morning we were back at her pulmonologist’s office. The doctor prescribed some more medications for her and gave us the option of checking her back into the hospital. Since we have nursing care at home I decided to not check her back in to help keep her from getting any new bugs from all of the other sick kids in the ICU. Kayla is doing pretty well right now but is still requiring lots of suctioning and full time oxygen. We are hoping that the new meds will kick in quickly so that Kayla will finally be able to get some relief.

Sunday, September 3, 2006

Sorry about being so slow in updating Kayla’s webpage but so much has happened since Kayla was removed from her ventilator on May 2nd. Life has started to get back to ‘normal’ in many ways and we have had quite a summer. I celebrated my very first Mother’s Day on May 13th and having Kayla off of the ventilator was the best gift ever. On May 15th I took Kayla on her first trip to the Sacramento Zoo with another friend who has a daughter with special needs. We had a blast and it was great to get outdoors and just hang out.

On May 16th, Kayla began Speech Therapy at Easter Seals. We are hoping this will give Kayla a jump start since she wasn’t able to vocalize for so many months due to her intubation and trach tube. The therapist has taught us lots of techniques that we can use at home on a daily basis. On May 22nd Kayla had a follow-up eye exam that went really well. The doctors weren’t sure about Kayla’s vision up until now so it was such a relief to know that things are ok for the time being.

On June 6th Kayla began a summer swim program at Easter Seals. They have a therapy pool that is heated to 92 degrees so twice a week for the month of June, Kayla attended this program. They worked on lots of skills in the water although we had to refrain from any underwater lessons since Kayla still has a trach. It is kind of risky to be in the water with a trach since you can’t get any water near the trach but the benefits of the class outweighed the risks. This also gave Jeff and me a chance to meet a few other families with kids with special needs.

On June 18th Jeff celebrated his first Father’s Day. On June 20th, I unfortunately had to fly to Pensacola Florida for my Aunt Ida’s funeral. Aunt Ida died of Ovarian cancer at the age of 72. Ida was like a mom to me so it was a very difficult loss for me. Since Kayla was weaned off of the ventilator, I was able to take her with me. I met my mom at Oakland airport and we flew together so she could help out with Kayla. Kayla handled the flights (all 4 of them) really well. While we were in Florida, Kayla took her first sip out of a straw. It was a huge milestone for her since MMD causes quite a bit of facial weakness and it’s hard for her to close her mouth around the straw. She is such a champ!

On June 26th we took Kayla to a new Neurologist since we had differing philosophies from the Neurologist that Kayla saw in the hospital. Dr. Pinter was amazed at Kayla’s progress and basically told us to keep doing what we have been doing because it was working so well. In his report he wrote “Kayla’s parents know as much about MMD as any Neurologist.” It was flattering but a little scary to think that might be true.

On June 30th, Kayla went to her first concert. I met my sister Kathy, her kids and my parents at a Mark Knoefler and Emmylou Harris concert in Berkeley. We sat on the lawn and had a really great time. I can’t begin to tell you how happy I was that night. It was so amazing to sit there under the stars holding Kayla in my arms. I had such a burst of emotion all night long and have never appreciated life more and felt so happy.

Kayla got her first cold on July 11th. She tolerated it pretty well although we had to suction her every few minutes which gets pretty exhausting. Jeff and I had recently decided to give up night nursing so we ended up having to stay up with her all night and make sure she was able to breath. It was pretty exhausting but we got through it ok.

On July 23rd some of Kayla’s cousins from Maryland arrived for Kayla’s birthday celebration. Over the next few days the rest of my family arrived so we ended up with 15 people living at our house for over a week. There were 8 kids under the age of 10. The kids basically lived in the pool but we did make them come out for meals and to sleep.

In preparation for Kayla’s first birthday, on July 24th our friend and hairdresser gave Kayla her first haircut. She looked like such a big girl sitting there in the chair. Kayla’s cousins gathered around and watched the big moment as her hair fell to the floor.

On Kayla’s first birthday, July 28th, we took Kayla and her cousins up to Napa for a festival. Kayla spun a wheel in a game at the festival and won a $400 gift certificate for wine tasting in Napa. I guess we’ll have to save that until she’s 21. We got back home late that night to finish setting up the final detail for Kayla’s birthday party the next day. We celebrated Kayla’s first birthday in style and had 77 of Kayla’s closest friends over to the house for a swim party and luau. We had a jump house, body tattoos, bubbles, a video of Kayla’s first year, lots of food and drinks and of course every one swam in the pool. It was an amazing celebration of Kayla’s life. Both Jeff and I tried to make a toast but we both ended up breaking down and crying and were unable to speak. We were both so overcome with emotion all day.

On August 7th, the MDA brought a local television crew to our home to interview us about Kayla for the Jerry Lewis Labor Day Telethon in September. It will be aired just after 11 a.m. PST on Monday, September 4th, Labor Day. We aren’t sure if the segment will be aired nationally but if you have a chance watch and let us know.

On August 9th, Kayla has hit some amazing new milestones. We have been working with Kayla on baby signing and after a full year, Kayla finally did her first sign for ‘milk’. We are hoping that this will open up a whole new world of communication for Kayla. We work every day on teaching her new signs but for now she has still only done that one sign. Through this experience, we have learned to take things one day at a time. Kayla also recently started going from her tummy to pulling up to sitting on her own. She moves fairly slowly but she eventually sits up and continues to amaze us every day. Kayla is also getting mobile and can roll across the floor to get things that she wants to play with. Although she isn’t crawling yet, I’m sure that she will in the near future. Kayla is also now responding to our question “How big is Kayla?” by throwing up her arms over her head and laughing. It is so unbelievably adorable.

On August 16th, Kayla’s cousins, Shelby and Lindsay, came out to visit us from New Jersey. They were here for two weeks helping to take care of Kayla. On August 22nd, the girls and I went to volunteer at the Sacramento MDA Executive Lockup. It is where executives volunteer to be locked up in a faux jail and then they call their friends to bail them out. By the end of the day, we had raised over $40,000 in donations. Kayla was a hit with the crowd. It was an amazing experience for all of us. .

Thanks for being there for our family and supporting us through this experience. We love you all!

Myotonic Dystrophy Information and Support

Favorite Websites

Kayla's Milestones

July 28, 2017

12 Years Old

90 lbs. 5 ft. 4 in.

Kayla had a great 6th grade year and was on the honor roll all 4 quarters (with a full time 1:1 aide who helps to keep her on track and organized). Kayla is remaining really strong and just finished her 4th year in a research study at the University of Utah and might be in an upcoming clinical trial. Kayla still loves music and books and is reading pretty well considering all of her challenges. She's just amazing!

July 28, 201611 Years Old78 lbs. 5 ft. 2 in.Kayla is starting Middle School in 6th Grade soon. She went on a trip to Hawaii this summer thanks to Make-A-Wish! Kayla has a new step-dad, Paul who she loves so much. Kayla is growing up so quickly and is definitely turning into a tween.

July 28, 201510 Years Old75 lbs. 5 ft. Kayla is starting 5th Grade soon. It has been a tremendous year in terms of her educational progress. She really struggles with math but is consistently improving in Language Arts. Kayla is really excited to have a new soon to be Step-dad in her life and is preparing to be my flower girl for our wedding in September.

July 28, 20149 Years Old70 lbs. 4 ft. 10 in.Kayla is starting 4th Grade soon. It has been a tremendous year in terms of her GI problems. She is finally potty trained. (She's going to read this some day and be so mad at me for saying that). She still has lots of struggles but Kayla's a happy little girl who loves to read and especially loves music and dancing.

July 28, 20138 Years Old67 lbs. 4 ft. 8 in.Kayla is starting 3rd Grade soon. She still struggles with some GI issues, fatique, respiratory challenges and muscle weakness but she is doing pretty well overall. She loves to read and loves her friends at school.

July 28, 20127 Years Old65 lbs. 4 ft. 6 in.Kayla is starting 2nd Grade soon. She has made incredible progress over the years, I'm so proud of her. She still struggles with GI issues but is overall a happy, sweet little girl and has made several great new friends over the past year.

July 28, 20116 Years Old58 lbs. 4 ft. 3 in.Kayla is starting First Grade soon. She is talking in full sentences now. She is using 8-10 word sentences. She is reading really well although slower than average but who cares, she's reading! What a little miracle!

July 28, 20105 Years Old50 lbs. 4 ft.Kayla is starting Kindergarten soon. She is talking so much now, it just amazes me. She is using 4-5 word sentences. Her language took off as soon as we put her into an after school day care program where she is fully integrated.

July 28, 20094 Years Old48 lbs. 3 ft. 9 in.Kayla is starting her second year of pre-school soon. She is signing over 500 signs now and her comprehension is really good. She is still struggling with expressive language but is able to say two to three words together although her speech is hard to understand so we are looking into a communication computer so that she can communicate with her peers more easily.

July 28, 20083 Years Old40 lbs. 3 ft. 4 in.Kayla is walking really well now and hasn't used her walker in over 8 months.She is signing 250 signs now which is great since her speech is delayed.

July 26, 20072 Years Old35 lbs. 38 in.Kayla took her first steps independently two days before her second birthday. What a miracle! She's still using a walker but is getting stronger everyday and we hope she will be walking on her own very soon.

March 28, 200720 Months30 lbs. 36 in.Kayla is now able to walk with the aide of a walker although she is still a bit unsteady and is dinging up all of our walls in the house. She is able to communicate with us and has a signing vocabulary of over 25 baby signs. Kayla is also starting to communicate verbally more and can say up to 10 words now, including her new favorite word, "bubbles".

November 28, 200616 months27 lbs. 9 oz. 34 1/2 in.Kayla started pulling up to standing last week and started crawling today! Kayla can do 10 signs now and can say 3 words, Dada, Mama & Up.

October 28, 200615 Months26 lbs. 8.5 oz. 33 3/4 in.Kayla started walking along our couch this week! She still isn't crawling yet but she is well on her way. Kayla has been selected as the regional 'Youth Ambassador' for Easter Seals! That's my girl!

September 28, 200614 Months25 lbs. 5 oz. 33 1/2 in.Kayla's story was highlighted on the 2006 Jerry Lewis MDA Labor Day Telethon which aired locally in the Sacramento region.

August 28, 200613 Months25 lbs. 12 oz. 33 1/4 inKayla made her first attempt at real communication earlier this month and did her first 'baby sign' for the word "milk". YEAH!

July 28, 20061 Year/10 Months Adj24 lbs. 33 in.Kayla is 1 today! We had a huge celebration of her life with friends and family from all over the country. What an amazing milestone for a girl that wasn't supposed to live to see 1. June 28, 200611 Months/9 Months Adj22 lbs. 12 oz. 32 5/8 in.Kayla took her first trip on an airplane. On that trip to Florida, she took her first sip from a straw, something that doctors said she wouldn't likely do because of her low facial tone and open mouth posture. Go Kayla!

May 28, 200610 Months/8 Months Adj21 lbs. 8 oz. 31 3/4 in.Kayla is finally sitting up without any support. She has been completely ventilator free for almost a month now! YEAH!

April 28, 20069 Months/7 Months Adj20 lbs. 6 oz. 30 3/4 in.Kayla is almost able to sit up on her own and her head control is getting better every day. She still gets tired quickly but has such determination.

March 28, 20068 Months/6 Months Adj19 lbs. 14.5 oz. 29 3/4 in.Kayla is finally off of the ventilator during all waking hours and for short 1 hour naps. She no longer needs to be tube fed. Yeah! She is starting to coo and make all sorts of new sounds. Oh, and she rolled over on her own for the first time at the beginning of March! That's my girl!

February 28, 20067 Months/5 Months Adj19 lbs. 6 oz. 28 3/4 in.Kayla is learning to hold her head upright when sitting. She is also starting to roll from side to side on her own now. Kayla is off of the ventilator for 12 hours a day. January 28, 20066 Months/ 4 Months Adj17 lbs. 5 oz. 26 3/4 in.Kayla is able to lift her head slightly when on her tummy. She also started sucking her thumb and batting at her toys over her playmate. Kayla is now off of the ventilator for 8 hours a day.

December 28, 20055 months/3 Months Adj14 lbs. 4 oz. 25 1/2 in.Kayla started smiling more and for longer periods. She is also starting to come off of the ventilator for short 30 minute spurts, 3 times a day and is handling it well. GO KAYLA! We heard her voice for the first time on the 2nd. What an amazing experience after not hearing her make any sounds for 5 months.

November 28, 20054 Months/2 Months Adj11 lbs. 7 oz. 24 in.Kayla came home on the 8th and is showing huge improvements already. She began tracking people and especially loves her mechanical birds above her bed.

October 28, 20053 Months/1 Month Adj9 lbs. 4 oz. 23 in.Kayla began breastfeeding but is still being tube fed to keep up her weight. Kayla is getting stronger and might be able to finally come home in the next month or so.

September 28, 20052 Months Old8 lbs. 2 oz. 21 in.Kayla was diagnosed with Myotonic Muscular Dystrophy. She had a tracheotomy and g-tube surgery to help support her breathing and feeding. It's the first time we have seen Kayla without tape all over her face. She is so beautiful!

August 28, 20051 Month Old6 lbs. 4 oz. 19 in.Kayla is officially 1 month old today! What a celebration especially after the doctors said she wouldn't make it this far. She has such determination and a strong will to live. KAYLA, YOU GO GIRL!

July 28, 2005Happy Birthday4 lbs. 15 oz. 18 in.Kayla was born at Sutter Memorial Hosptial in Sacramento, CA by emergency c-section at 32 weeks gestation (7 months). Kayla was unable to breathe, move or eat by mouth and is on a ventilator and has a nasal feeding tube put in. The doctors said she has 'floppy baby syndrome' but haven't said much more yet.